Sunday, May 31, 2009

ME/CFS and the perils of ignorance, part I: A trip to the emergency room

Think living with a debilitating, incurable disease is tough? Try living with a debilitating, incurable disease while dealing with people who don't believe you have one.

Myalgic encephalomyelitis, aka ME/CFS, causes considerable pain, post-exertional malaise, cognitive impairment, and crushing exhaustion that is not relieved by rest. Despite solid scientificevidence that this is a physiological condition, many continue to believe that it's hypochondria, a psychosomatic disorder, or just plain laziness.

A typical example: Someone I know with ME/CFS -- the guy who inspired my lyrics for Everybody Knows About Me -- developed a lung infection. After attempting to deal with it on his own for a few weeks, he called his doctor's office. They told him (rather forcefully) to haul ass to the emergency room.

Here's what happened, in his own words:

I went to the emergency room for a potentially quite serious bacterial infection. During intake, when they asked me to tell them what major diseases I had, I made the error of including "myalgic encephalomyelitis." I did so because it is a (possible) explanation for (some of) various health issues.

Many hours of waiting1 later, it turned out that the doctor had never heard of the disease, and had looked it up on emedicine.com.

Those of you who have ME will be familiar with the results.

The slightly suppressed smirk and the leaning-to-one-side posture that says, "I should really be doing important things, but this is slightly amusing, so I will waste a few minutes here before getting back to doing them." Upon being told that one is essentially bedbound on every day except for emergencies, the accusation of "you were able to make it here with no problem, weren't you? [So therefore you can go anywhere you need to anytime]" The visible show of patience while refusing to take strong suggestions of a staph aureus infection seriously. The suggestion that it might be a cold. And of course the "you look fine."

The self-criticism for making the mistakes one makes, due to the fog, to the toxic environment, to being vertical for that long for the first time in more than a year. Mistakes like forgetting to point out stupid defensive facts like "I had to take stimulants to be here and my body will be paying for this." Yet knowing that they still would not believe.

The self-criticism for mentioning the disease.2 The well-founded concern that the permanent computer record will now poison future emergency room visits. The futile, desperate wondering whether it's possible to expunge that stigma after the fact, now that it has been proven how prejudiced people can be.

The wondering what to do about the infection now.

And, above all, the well-founded concern that the X-rays, taken at great personal and financial cost, received no more than a cursory glance.3

A cursory glance.

[1] Often with no place to lie down provided. This is extremely difficult for somebody who can realistically be vertical only for the length of time it takes to go to the bathroom. If you were an unrealistic idealist, you might harbor the ridiculous notion that a hospital would understand this.

[2] If they have not heard of it, knowing it won't help them treat you. If they have heard of it, they have heard harmful misinformation. Nearly zero chance of the information being used wisely to heal you.

[3] This doctor casually told us a story about how those in his sub-field often just (metaphorically) kick positive X-ray/CT/MRI results "under the table" if they are not relevant to what they are asked to report on. It was clear that this was his own attitude.

* * *

Me again.

Those of you who have never dealt with unbelieving medical staff might be skeptical. "Maybe he saw what he expected to see," I hear you cry.

I was there. I took a vacation day to drive him to the hospital and stay with him while he talked to various medical professionals, including the doctor he spoke of. He didn't imagine it.

The doctor wasn't mean. He didn't come right out and proclaim ME/CFS was psychological. He didn't point and laugh. But his body language had changed. His tone suggested ... not a sneer, exactly, but a "you can't put anything over on me" cockiness.

Oh, and he said that sending us to the emergency room was an "abuse of the system."